Equity, diversity, and inclusion at the Global Alliance for Genomics and Health

Neerjah Skantharajah; Shakuntala Baichoo; Tiffany F Boughtwood; Esmeralda Casas-Silva; Subhashini Chandrasekharan; Sanjay M Dave; Khalid A Fakhro; Aida B Falcon de Vargas; Sylvia S Gayle; Vivek K Gupta; Rachele Hendricks-Sturrup; Ashley E Hobb; Stephanie Li; Bastien Llamas; Catalina Lopez-Correa; Mavis Machirori; Jorge Melendez-Zajgla; Mareike A Millner; Angela J H Page; Laura D Paglione; Maili C Raven-Adams; Lindsay Smith; Ericka M Thomas; Judit Kumuthini; Manuel Corpas

doi:10.1016/j.xgen.2023.100386

Equity, diversity, and inclusion at the Global Alliance for Genomics and Health

Cell Genom. 2023 Aug 24;3(10):100386. doi: 10.1016/j.xgen.2023.100386. eCollection 2023 Oct 11.

Authors

Neerjah Skantharajah^{1

2}, Shakuntala Baichoo³, Tiffany F Boughtwood^{4

5}, Esmeralda Casas-Silva⁶, Subhashini Chandrasekharan⁷, Sanjay M Dave⁸, Khalid A Fakhro^{9

10}, Aida B Falcon de Vargas^{11

12}, Sylvia S Gayle⁶, Vivek K Gupta¹³, Rachele Hendricks-Sturrup¹⁴, Ashley E Hobb¹⁵, Stephanie Li^{2

16}, Bastien Llamas^{17

18

19

20}, Catalina Lopez-Correa²¹, Mavis Machirori^{22

23}, Jorge Melendez-Zajgla²⁴, Mareike A Millner²⁵, Angela J H Page^{2

16}, Laura D Paglione^{26

27}, Maili C Raven-Adams^{2

28}, Lindsay Smith^{1

2}, Ericka M Thomas⁷, Judit Kumuthini²⁹, Manuel Corpas³⁰

Affiliations

¹ Ontario Institute for Cancer Research, Toronto, ON, Canada.
² Global Alliance for Genomics and Health, Toronto, ON, Canada.
³ University of Mauritius, Reduit, Mauritius.
⁴ Australian Genomics, Parkville, VIC, Australia.
⁵ Murdoch Children's Research Institute, Parkville, VIC, Australia.
⁶ National Cancer Institute, Rockville, MD, USA.
⁷ The All of Us Research Program, National Institutes of Health, Bethesda, MD, USA.
⁸ Department of Biotechnology, Hemchandracharya North Gujarat University, Patan, Gujarat, India.
⁹ Department of Human Genetics, Sidra Medicine, Doha, Qatar.
¹⁰ Department of Genetic Medicine, Weill Cornell Medical College, Doha, Qatar.
¹¹ Hospital Vargas de Caracas, Vargas Medical School, Universidad Central de Venezuela, Caracas, Venezuela.
¹² Hospital de Clínicas Caracas, Caracas, Venezuela.
¹³ Macquarie Medical School, Faculty of Medicine, Health and Human Sciences, Macquarie University, Sydney, NSW, Australia.
¹⁴ Duke-Margolis Center for Health Policy, Washington, DC, USA.
¹⁵ DNAstack, Toronto, ON, Canada.
¹⁶ Broad Institute, Cambridge, MA, USA.
¹⁷ Australian Centre for Ancient DNA, School of Biological Sciences and The Environment Institute, University of Adelaide, Adelaide, SA, Australia.
¹⁸ ARC Centre of Excellence for Australian Biodiversity and Heritage, University of Adelaide, Adelaide, SA, Australia.
¹⁹ National Centre for Indigenous Genomics, John Curtin School of Medical Research, Australian National University, Canberra, ACT, Australia.
²⁰ Indigenous Genomics, Telethon Kids Institute, Adelaide, SA, Australia.
²¹ Genome Canada, Ottawa, ON, Canada.
²² Ada Lovelace Institute, London, UK.
²³ PEALS, Newcastle University, Newcastle Upon Tyne, UK.
²⁴ Instituto Nacional de Medicina Genomica, Mexico City, Mexico.
²⁵ Maastricht University, Health Law and Governance Group, Maastricht, the Netherlands.
²⁶ Spherical Cow Group, New York, NY, USA.
²⁷ Laura Paglione LLC, New York, NY, USA.
²⁸ Wellcome Sanger Institute, Hinxton, UK.
²⁹ South African National Bioinformatics Institute, University of Western Cape, Cape Town, South Africa.
³⁰ School of Life Sciences, University of Westminster, London, UK.

Abstract

A lack of diversity in genomics for health continues to hinder equitable leadership and access to precision medicine approaches for underrepresented populations. To avoid perpetuating biases within the genomics workforce and genomic data collection practices, equity, diversity, and inclusion (EDI) must be addressed. This paper documents the journey taken by the Global Alliance for Genomics and Health (a genomics-based standard-setting and policy-framing organization) to create a more equitable, diverse, and inclusive environment for its standards and members. Initial steps include the creation of two groups: the Equity, Diversity, and Inclusion Advisory Group and the Regulatory and Ethics Diversity Group. Following a framework that we call "Reflected in our Teams, Reflected in our Standards," both groups address EDI at different stages in their policy development process.

Keywords: EDI; GA4GH; community; diversity; equity; genomics; inclusion.

Publication types

Review

Abstract

Publication types

Grants and funding